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You Just Gotta Love Those Few Doctors Who Are Gems!!!

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Not just Gems, but Diamonds, or in my case because I don't like Diamonds, how about Sapphires!!!

My PCP just continues to amaze me.

The anxiety I have about appoinments has increased to the point that I stress for 3 days before an appointment almost to the point of panic.

Then no matter how the appoinment goes my system goes into what I call "Let Down" mode.

It's a bit like what was being discussed here recently, the more stressful the situation the better I did, until one day my body said ENOUGH.

So now after something stressful like an appointment, test, procedure whatever..... you can count me out and I'm on the couch, on the floor, anywhere but good for 3 days after.

And yup as much as I love my PCP I even get nervous going there because I'm afraid one day he will give up. This is not an unfounded fear, I've had many give up.

I know we all have had Doctors give up, I've had them do 180's and 360's from one appointment to the next, so I always hold my breath.

My PCP though........... Thinks with me, Laughs with me, Goes way outside the box with me, and reads every single thing I bring him..... including suggestions from this forum.

I'm up right now from doing some research on some lab work he ordered that he is having me tweak for him and find the info for him.

Thanks to Katybug my task was easy, he wanted information on how Complements can be checked and tested and how they play a role.

So he got my Positive SFN labs from out of state.

I got the labwork the Arizona Doctor ordered, it was all normal as usual, just the basics ANA, Sjogren's, Gliadin, GAD.

Does my PCP stop..... nope

I now have orders for ANNA panels, Ganglioside panels, Complement panels, B Vitamin Panels, and a 24 hour urine for heavy metals and catecholamines.

And, the strangest that I never thought of.........so far outside the box that I had to tell him I couldn't produce a document stating my travels to have it covered....

Chagas Disease, Chronic variety

I haven't been outside the US so I don't have the supporting document but he is looking into how I can get it covered anyway because I have worked in the past with flowers that came from South America and other places that have that disease.

The best things are that we can laugh about things that aren't even really funny, like the above conversation about Chagas.

Or how I told him my newest symptom is really bad adema in my abdomen. I've always been bloaty but not like this and I haven't gained weight really.

He found it hysterical when the point I made when he said it wasn't bad was that I had to buy new underwear........seriously I did.

He about fell off his chair laughing. So did my Mother and I.

He has his flaws, and he knows it, nobody is perfect, and he has way too many patients. At least he's not afraid to admit that he can't do everything and know everything.

Best of all after he says all this.........he tells me I'm the smartest person he's ever met and he wishes he can get me better enough to go to med school.... and if not at least he can learn things from me and hopefully help another person in the future.

Can't get much better than that!!!

Just wanted to share a positive with all the negatives I've been feeling.

There are some Doctors out there that really do find us interesting.

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Oh linz, so glad to hear you have a doctor in your corner that is a saphire! I'm praying that they get to the bottom of your fast deterioration soon!! Did your immunoglobulins come back normal too? Your sfn tests though does show something is wrong and at least you've ruled out some of the more obvious causes. So glad your doc is looking deeper.

I get what you say about the physical exhaustion stress happening pre and post doctor's appointment. I always feel like I have to prove to them something is really wrong. Then I always leave the appointment remembering I forgot to ask about something. Then you have to wait months to ask again.

I do have a few docs now that I feel I can trust. The new rheumy, after not fitting any kind of diagnostics closely enough for years, said I do indeed have autoimmune connective tissue disease, defined as uctd, which can actually be treated. My neuro had suggested methotrexate, not ready for that, and though she agreed we may need to go there, she agreed plaquinel is something we could try first. It has way less side effects then methotrexate, so I'm happy about that.

I hadn't been feeling great, having a bit of a pitty party for myself and had been hoping the ivig infusion alone would be enough. It can't do everything but I was hoping. I'm glad the doctors have finally made what I think are appropriate diagnosis's now, but I've had signs and symptoms of thyroid, autoimmunity and immune deficits for years; I just turned 55 and it has taken since I was in my late twenties to finally get a proper diagnosis. I can't help but feel early treatment would have controlled or prevented me from getting to the place I am now.

That being said my last infusion went great after having to put it off an extra week, I didn't want to do it on my b-day. I feel better and I can physcially feel the difference. I was having stomach pain which looks like it was coming from the new generic synthroid I started, I switched to brand and it has stopped. So, hopefully the thyroid stuff will improve and in about 3 months I'm praying to see autoimmune improvements with the placquinel getting to theurapuetic levels. It is so sad that we get relief from getting a diagnosis, no one wants to be sick, but to finally have names for all the symptoms that have been there for so long, and to actually have some, somewhat effective treatments, does bring hope that better days are ahead.

I really wish that for you linz, take care now!

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Hi Naomi---

No sorry not New Jersey..... but New Mexico....still has a NEW in there.... LOL.

I have a great Primary Care but the rest of the Docs here are mostly iffy. Good GI and good Immunologist.

We are kind of backwards in medical care here. I've been told point blank by Doctors here that I live a really bad state/city to have complex medical issues.

That's scary to hear from a Doctor that works here, and I've had 3 tell me this.

Hi AZ Girl--

Long time no hear, was worrying about you, glad things are going a bit better. The IGG came back a bit low, as it had last year when it was tested here. Not real low just a bit under the level.

A few of the tests that were ordered got messed up by the lab here when they tried to transfer them over to the Arizona lab.

So now my Doc here has re-ordered what got messed up and I'm wiating to here from Arizona what the next plan is.

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Hey linz, I did pm you on april 12th did you get it? It was a new reply in the urgent question pm. I was wondering if you got it as I didn't get a reply this time. I still have it in my mail box.

Interesting that you are a bit low, that can be enough to show immune issues. Were all of them low or just one or two, IGG, IGA, IGM? You said you had an immunologist, did they ever do the vaccine challenge test on you, or the sub ig panels? Those are few tests that I wish levine had done on me, if those are bad then there is no question there is an immune issue.

Oh I can't believe there was another snafu, ugh! Can't anything go smooth and just be easy? Good your doc is doing the right thing and sees where our neuro was going. At least he and levine are still working you up. Are you going to have them communicate with each other? I know he was picky about the laboratories he uses and I had to have some of the tests drawn at a special place that forwarded them to a lab that speicalized in those test.

I swear I had the same kind of delays and a few hideous docs, when I was getting tested. I'm a spiritual girl and at one point I finally prayed a circle of protection, now don't think I'm crazy, cause it did help, but I said in the name of jesus I command ------ to get out of my healthcare. No offense to any one not pushing my beliefs here, it gives me comfort that a higher power is watching over me, no matter what happens, it gets me thru the tough spots.

Linz, look forward to hearing your results when they come in sooner, rather then later. Take Care girl! azg

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